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Ensuring no one has to face Facioscapulohumeral Muscular Dystrophy (FSHD) alone

Our goal for all impacted by FSHD is two-fold: 1) Speed the delivery of effective treatments and a cure; 2) Ensure those impacted have what they need to live their best life.

Join our global community to help advance groundbreaking FSHD research, find the education and support you need, and build a strong community who understands and cares.

Ensuring no one has to face Facioscapulohumeral Muscular Dystrophy (FSHD) alone

Our goal for all impacted by FSHD is two-fold: 1) Speed the delivery of effective treatments and a cure; 2) Ensure those impacted have what they need to live their best life.

Join our global community to help advance groundbreaking FSHD research, find the education and support you need, and build a strong community who understands and cares.

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Advance Research

Every breakthrough in FSHD has been made because patients and their family members got involved. We believe a treatment is within sight; your participation will move us closer, faster.

HELP ADVANCE RESEARCH
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Educate Yourself

FSH Muscular Dystrophy is different for everyone. Each person has their own unique journey with FSHD.  The FSHD Society is here to educate and empower individuals to live their best lives until a cure is found.

LEARN MORE
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Build Community

There is great power in coming together. Around the globe, individuals with FSHD prove this every day. It is each person's unique strengths, skills, and interests that makes our community strong.

GET INVOLVED
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Invest in Hope

We bring people together to find solutions; researchers, doctors, the drug development industry, patients and families. Your participation is the key. There are many ways you can get involved.

SEE HOW YOU CAN HELP
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Who We Are

The  FSHD Society is the world’s largest research-focused patient support organization. We work with people and organizations to identify the barriers slowing down the discovery of treatments and cure, then work together on solutions.

Following the highest standards financial accountability, the FSHD Society has transformed the landscape for FSHD research, and is committed to making sure that no one faces this disease alone.

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FSHD University

Education: A Patient's Best Weapon for Change

FSHD University is your center for learning about the art and science of living with FSH muscular dystrophy. Our webinars and other resources are designed to empower individuals with FSHD to live their best lives, physically and mentally. Our departments of Physical Health, Wellness, and Research provide videos, articles, and other resources, by the world's top experts, including many people living with FSHD.

FSHD University is a place for you to gain knowledge, get connected, and find hope.

Learn More & Enroll in FSHD-U

Latest Blog Posts

Managing Fatigue

May 22, 2023 by jkinoshita

Our May Women on Wellness group discussion focused on a topic that is always a big concern, fatigue. This is a group of women who meet monthly on Zoom and share a common bond of having FSHD. “We speak openly with each other, however we maintain confidentiality of who shares what, as this is a…

Read More...
Project Mercury Inaugural Meeting

Unleashing the Power of Collaboration: Achieving More for FSHD Together

May 25, 2023 by Erin SAxon

by Ken Kahtava, FSHD Society This blog post was originally published here on the Project Mercury website.  On 11 May in Leiden, NL, the Project Mercury global task force members met for the first time to chart the path forward for achieving the…

Read More...
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Upcoming Events

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Today

May 2023

Tue 30
Featured Featured May 30 @ 8:00 pm - 9:00 pm Event Series CarePartner Hour

CarePartner Hour

Zoom Virtual Meeting

8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other care partners (the term we...

June 2023

Wed 7
Featured Featured Jun 7 @ 5:00 pm - 6:00 pm Event Series Women on Wellness

Women on Wellness – Instrumental activities of daily living

Zoom Virtual Meeting

First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Our topic this month is what we call "Instrumental ADL’s (e.g. managing finances, housekeeping, shopping, yard needs, etc.). We all face these challenges and look forward to our discussion and sharing of solutions. This is...

Thu 8
Featured Featured Jun 8 @ 12:00 pm - 1:00 pm Event Series Feeling Fit with FSHD

Feeling Fit with FSHD

Zoom Virtual Meeting

18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT For people living with FSHD who are interested in exercise and fitness, we meet on the 2nd and 4th Thursday of every month at 12:00 pm (noon) U.S. Eastern Time. Come dressed...

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General Mailing Address:

75 North Main Street, Suite 1073
Randolph, MA 02368 U.S.A.

Mail Donations to:

Department 960
PO Box 4106
Woburn, MA 01888-4106

(781) 301-6060

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